New diagnosis - now (officially) proud owner of 2 children with HF ASD

(3 Posts)
bigmouthstrikesagain Wed 20-Jul-16 09:56:17

See this thread for complexities of getting ds assessment in the first place.

So we have suspected known that ds age 11 is on the spectrum for a while. He fits the classic Aspergers profile. What has become clear is that attached to this main diagnosis is the additional Sensory processing problems and acute anxiety even some traits of a tic disorder. After the Paediatrician had gone through the 3Di questionnaire with us he asked DS if he could listen to his chest with his stethoscope. Only 20 mins after DS had patiently described all the areas of his body that cannot be touched - including Chest, neck, veins on his wrist and top of his foot - so it was not surprising that DS had a mini meltdown at the suggestion of a chest related examination! It was well timed in a way at it demonstrated what a knife edge of distress ds is constantly on. It is so painful to see how emotionally fragile he is though and what low self esteem he has - he couldn't come up with anything he is good at for the doctor, when asked, despite the fact he is top sets for everything at school has read most of the school library and has been considered gifted and talented at History sad.

Eventually ds calmed enough to allow the Dr to do the chest exam with ds holding the stethoscope in place - I was very proud of of him.

Despite the long process of assessment and the clear diagnosis - when it came to the end of the appointment and the dr had nothing concrete to offer in the way of support. He suggested a book on parenting a sensory smart child, said he would make a 'Chums' referral for the anxiety but he wasn't confident it would be accepted and said the NHS didn't offer much in on-going support. It feels like we have climbed a mountain then been abandoned at the top. I kind of expected it of course but it still feels wrong.

I am not sure what I am wanting from this thread - I think I just feel a little lost now, after months of trying to get this assessment, phone calls and letters and constant chasing to make sure everything happened I pushed this baby out and now I am left with out a clear plan.

OP’s posts: |
PolterGoose Wed 20-Jul-16 11:51:01

Message withdrawn at poster's request.

youarenotkiddingme Wed 20-Jul-16 18:09:33

I agree salt and OT are useful. There seems to be an increasing amount of OT that have sensory intergration qualifications as well which sounds like something your DS will benefit from.

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